Benefit-risk of Patients' Online Access to their Medical Records: Consensus Exercise of an International Expert GroupPrimary Health Care Informatics Working Group Contribution to the Yearbook of Medical Informatics 2018
22. April 2018 (online)
Background: Patients' access to their computerised medical records (CMRs) is a legal right in many countries. However, little is reported about the benefit-risk associated with patients' online access to their CMRs.
Objective: To conduct a consensus exercise to assess the impact of patients' online access to their CMRs on the quality of care as defined in six domains by the Institute of Medicine (IoM), now the National Academy of Medicine (NAM).
Method: A five-round Delphi study was conducted. Round One explored experts' (n = 37) viewpoints on providing patients with access to their CMRs. Round Two rated the appropriateness of statements arising from Round One (n = 16). The third round was an online panel discussion of findings (n = 13) with the members of both the International Medical Informatics Association and the European Federation of Medical Informatics Primary Health Care Informatics Working Groups. Two additional rounds, a survey of the revised consensus statements and an online workshop, were carried out to further refine consensus statements.
Results: Thirty-seven responses from Round One were used as a basis to initially develop 15 statements which were categorised using IoM's domains of care quality. The experts agreed that providing patients online access to their CMRs for bookings, results, and prescriptions increased efficiency and improved the quality of medical records. Experts also anticipated that patients would proactively use their online access to share data with different health care providers, including emergencies. However, experts differed on whether access to limited or summary data was more useful to patients than accessing their complete records. They thought online access would change recording practice, but they were unclear about the benefit-risk of high and onerous levels of security. The 5-round process, finally, produced 16 consensus statements.
Conclusion: Patients' online access to their CMRs should be part of all CMR systems. It improves the process of health care, but further evidence is required about outcomes. Online access improves efficiency of bookings and other services. However, there is scope to improve many of the processes of care it purports to support, particularly the provision of a more effective interface and the protection of the vulnerable.
- 1 Shah SG, Fitton R, Hannan A, Fisher B, Young T, Barnett J. Accessing personal medical records online: a means to what ends?. Int J Med Inform 2015; 84 (02) 111-8
- 2 Bowden T, Coiera E. The role and benefits of accessing primary care patient records during unscheduled care: a systematic review. BMC Med Inform Decis Mak 2017; 17 (01) 138
- 3 Adler-Milstein J, Holmgren AJ, Kralovec P, Worzala C, Searcy T, Patel V. Electronic health record adoption in US hospitals: the emergence of a digital "advanced use" divide. J Am Med Inform Assoc 2017; 24 (06) 1142-8
- 4 Baker MTM, Mawby R. The Future of GP Out-of-Hours Care. An RCGP Position Statement. London, UK: Royal College of General Practitioners; 2014. Available from: http://www.rcgp.org.uk/-/media/Files/Policy/A-Z-policy/RCGP-The-Future-of-GP-Out-of-Hours-Care-2015.ashx?la=en
- 5 Practitioners RCoG. A Vision for General Practice in the future NHS: The 2022 GP. London, UK: Royal College of General Practitioners; 2013. Available from: http://www.rcgp.org.uk/campaign-home/~/media/files/policy/a-z-policy/the-2022-gp-a-vision-for-general-practice-in-thefuture-nhs.ashx
- 6 Ware JMR. Patient access to general practice: ideas and challenges from the front line. London, UK: Royal College of General Practitioners; 2015. Available from: https://www.hiirc.org.nz/page/55381/patient-access-to-general-practice-ideas/;jsessionid=A570B42B376B6E92FBFAEB04FABD2C04?contentType=251§ion=13825
- 7 Mold F, de Lusignan S, Sheikh A, Majeed A, Wyatt JC, Quinn T. , et al. Patients' online access to their electronic health records and linked online services: a systematic review in primary care. Br J Gen Pract 2015; 65 (632) e141-51
- 8 de Lusignan S, Mold F, Sheikh A, Majeed A, Wyatt JC, Quinn T. , et al. Patients' online access to their electronic health records and linked online services: a systematic interpretative review. BMJ Open 2014; 4 (09) e006021
- 9 Iacobucci G. Patients promised online access to their medical records by 2018. BMJ (Clinical research ed) 2015; 351: h4740
- 10 Woodman J, Sohal AH, Gilbert R, Feder G. Online access to medical records: finding ways to minimise harms. Br J Gen Pract 2015; 65 (635) 280-1
- 11 Vodicka E, Mejilla R, Leveille SG, Ralston JD, Darer JD, Delbanco T. , et al. Online access to doctors' notes: patient concerns about privacy. J Med Internet Res 2013; 15 (09) e208
- 12 Wade-Vuturo AE, Mayberry LS, Osborn CY. Secure messaging and diabetes management: experiences and perspectives of patient portal users. J Am Med Inform Assoc 2013; 20 (03) 519-25
- 13 Hannan A. Providing patients online access to their primary care computerised medical records: a case study of sharing and caring. Inform Prim Care 2010; 18 (01) 41-9
- 14 Nagykaldi Z, Aspy CB, Chou A, Mold JW. Impact of a Wellness Portal on the delivery of patient-centered preventive care. J Am Board Fam Med 2012; 25 (02) 158-67
- 15 Delbanco T, Walker J, Bell SK, Darer JD, Elmore JG, Farag N. , et al. Inviting patients to read their doctors' notes: a quasi-experimental study and a look ahead. Ann Intern Med 2012; 157 (07) 461-70
- 16 Root J, Oster NV, Jackson SL, Mejilla R, Walker J, Elmore JG. Characteristics of Patients Who Report Confusion After Reading Their Primary Care Clinic Notes Online. Health Commun 2016; 31 (06) 778-81
- 17 Kummervold PE, Trondsen M, Andreassen H, Gammon D, Hjortdahl P. [Patient-physician interaction over the internet]. Tidsskrift for den Norske laegeforening : tidsskrift for praktisk medicin, ny raekke. 2004; 124 (20) 2633-6
- 18 Lin CT, Wittevrongel L, Moore L, Beaty BL, Ross SE. An Internet-based patient-provider communication system: randomized controlled trial. J Med Internet Res 2005; 7 (04) e47
- 19 Matheny ME, Gandhi TK, Orav EJ, Ladak-Merchant Z, Bates DW, Kuperman GJ. , et al. Impact of an automated test results management system on patients' satisfaction about test result communication. Arch Intern Med 2007; 167 (20) 2233-9
- 20 Alander T, Scandurra I. Experiences of Healthcare Professionals to the Introduction in Sweden of a Public eHealth Service: Patients' Online Access to their Electronic Health Records. Stud Health Technol Inform 2015; 216: 153-7
- 21 Schnipper JL, Gandhi TK, Wald JS, Grant RW, Poon EG, Volk LA. , et al. Effects of an online personal health record on medication accuracy and safety: a cluster-randomized trial. J Am Med Inform Assoc 2012; 19 (05) 728-34
- 22 Sarkar U, Lyles CR, Parker MM, Allen J, Nguyen R, Moffet HH. , et al. Use of the refill function through an online patient portal is associated with improved adherence to statins in an integrated health system. Med Care 2014; 52 (03) 194-201
- 23 Moreno G, Lin EH, Chang E, Johnson RL, Berthoud H, Solomon CC. , et al. Disparities in the Use of Internet and Telephone Medication Refills among Linguistically Diverse Patients. J Gen Inter Med 2016; 31 (03) 282-8
- 24 Wright A, Poon EG, Wald J, Feblowitz J, Pang JE, Schnipper JL. , et al. Randomized controlled trial of health maintenance reminders provided directly to patients through an electronic PHR. J Gen Intern Med 2012; 27 (01) 85-92
- 25 Litchfield IJ, Bentham LM, Lilford RJ, Greenfield SM. Test result communication in primary care: clinical and office staff perspectives. Fam Pract 2014; 31 (05) 592-7
- 26 Mak G, Smith Fowler H, Leaver C, Hagens S, Zelmer J. The Effects of Web-Based Patient Access to Laboratory Results in British Columbia: A Patient Survey on Comprehension and Anxiety. J Med Internet Res 2015; 17 (08) e191
- 27 Institute of Medicine Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington (DC): National Academies Press (US); 2001
- 28 Fitch KBSJ, Aguilar MD, Burnand B, LaCalle JR, Lazaro P, van het Loo M. , et al. The RAND/UCLA Appropriateness Method User's Manual; 2001
- 29 Delbanco T, Walker J, Darer JD, Elmore JG, Feldman HJ, Leveille SG. , et al. Open notes: doctors and patients signing on. Ann Intern Med 2010; 153 (02) 121-5
- 30 Buck J, Garde S, Kohl CD, Knaup-Gregori P. Towards a comprehensive electronic patient record to support an innovative individual care concept for premature infants using the openEHR approach. Int J Med Inform 2009; 78 (08) 521-31
- 31 Ara R, Wailoo A. NICE Decision Support Unit Technical Support Documents. NICE DSU Technical Support Document 12: The Use of Health State Utility Values in Decision Models. London: National Institute for Health and Care Excellence (NICE)unless otherwise stated; 2011
- 32 Weiner JP. Doctor-patient communication in the e-health era. Isr J Health Policy Res 2012; 1 (01) 33